Tobiano

I saw khaarina’s post on hands/feet going cold. Sever people mentioned that their right side is colder than their left. I’m wondering if anyone else’s right side is impacted more in other ways?? I’m more likely to have tremors on the right side of my body. During severe episodes, I experience more posturing/muscle rigidity on my right and sometimes head bobbing to the right. I have never figured out why. Anyone else?

I can so relate! I too have trouble juggling and tend to over commit. I really don’t have any magic answers. Slowly, I am learning to say no more. I also try to take rest breaks with my feet up throughout the day. I make sure to stay and home on either Saturday or Sunday, with no commitments, so that I can be rested for work. Reading this also helped me put things in perspective http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

That's great news!! What an accomplishment.

I agree with cupcakemama's suggestion about the referral to Hamilton. Feel free to message me if you want more information.

So sorry to hear that the meds aren’t working. That must be disappointing. Sounds like a good idea to go with your gut and explore other options. Do you think your immunologist would be supportive of a referral for the bone marrow test?

How frustrating! It's so hard to deal with a 'system' that doesn't get it. It's hard enough to not feel well ... then add on a bunch of unhelpful doctors. I don't have any words of wisdom unfortunately. Hang in there.

I enjoyed reading this We have some very talented poets here!!

Thanks for sharing this idea. I'm glad it seems to be working for you.

I'm still under investigation. I'm waiting for the results from a holter monitor that caught one of the major episodes. I will also be seen for full autonomic testing at a specialty clinic within the next few months... I'm so hoping that I will have more informaion after that. Have you had full autonomic testing?

Weathermandj, if you figure out how to stop these episodes once they have started please let me know. I'm at a loss right now of what to do. During a major episode, my HR is usually 170-180 lying down with a host of other symptoms. I'm having a bad week right now and I have crashed like this several times since Monday. Things that seem to help right now are elevating my legs and trying to cool down with ice, however I don't have any medical interventions in place yet that get my HR down.

Good news

Yay!!

Weathermandj,

Thank you for sharing this. Can I borrow the "silly goose punk" expression sometimes?? Never heard that one before but it's a really good one in this context!

I saw both of your posts this morning. I can't believe the combination of everything you are going through right now. It must be so difficult. I'm glad you found this forum - we are here to listen any time. I hope you find more relief along your journey.

I take 10mg x 3/day. I noticed a decrease in blood pooling, especially in my hands. My hands used to be red and splotchy almost all day long. I notice this less now, although it still happens. The only side effects I had was scalp tingling and goosebumps about 15 minutes after taking my dose. After a few months, this stopped happening. I did not notice a chance in my weight. Midodrine is fast acting and I can definitely tell when the effects are wearing off.

CMReber - the walking trail sounds like a nice break. Let me know how it goes. I have a sit-stand work station on wheels that I can take around with me. I also sit on a therapy ball to keep my core and legs engaged. Not sure if you could try any of these strategies to keep moving.

I get this as well, especially on days when I'm doing a lot of desk work. I do better on days when I'm moving around more and not staying in a seated position for prolonged periods (which leads to brain fog). Sometimes I will work on my laptop from a reclined position or even lying down to prevent pooling in my legs. Not sure if this would be possible for you. Some days my body just goes into shut down and I end up taking a nap.

Something new happened today…When I got out of bed everything inside from my chest to my abdomen felt ‘frozen’ (not in terms of temperature but just ‘stuck’). I felt bloated but also in constant pain – especially stabbing pain if I touched my belly. I’ve had bladder spasms before and it sort of reminded me of that, but all over inside. I’m not sure quite how to explain it. It went away after 30 minutes of lying down. Has this ever experienced something like this?

Yes, sitting in a regular chair is not great. If I sit with my feet down I get horrible brain fog and my legs start to fall asleep. I always sit with my legs cross up on the chair or I kneel on my chair. I also have to get up very slowly so I don't crash when I stand. I do much better at a standing work station (although I can't stand still either so move around on the spot).

Oh no! Those days are just not fun. Hope tomorrow is a better day. Hang in there

So frustrating. Dealing with POTS alone is hard enough... then add on all this.

Oh Dani... that sounds terrible. Hope things continue to improve.

Brilliant!!

Even during my worst episodes my 02 saturation has been in the high 90s.

I hope your appointment tomorrow goes well and that you get some answers.

My experiences have been similar. The drug is very fast acting. I take it 3 times per day (every 4 hours).

I agree - TV, Ted Talks, talking to a good friend, and sometimes just having a good cry. Let's not forget the tall glass of gatorade. You can pour it in a wine glass if you want!

I try to sleep as much as possible to escape symptoms.